We’re putting the spotlight on Invisible Illnesses in this new series. Are you one of the many Kiwi women who suffers in silence? Share your story by emailing [email protected]
This week we heard from Sophie Sager who shared her incredibly frustrating (and painful!) story of suffering for more than 10 years, before she was finally diagnosed with Endometriosis. It’s a cripplingly painful condition, but bafflingly – despite the fact that 10% of NZ women suffer from it, it’s still very tricky to finally get a diagnosis.
Her story obviously struck a chord with many of you, because we’ve been inundated with messages about it this week, mainly from women who know that pain and frustration all too well.
It’s poignant, because this week is Invisible Illnesses Awareness Week – a week which aims to put the spotlight on those people who may look perfectly well on the outside, but are secretly battling a war within their bodies. It’s certainly true for endometriosis, as well as a slew of other illnesses that affect women. The cruel part about invisible illnesses is they can be hard to detect and diagnose – leaving many women suffering for years without answers, going from doctor to doctor, and wondering if perhaps it’s all in their minds (which is often what they’re told by healthcare professionals along the way).
One of the biggest groups of invisible illnesses are autoimmune diseases, of which there are currently 80 known diseases including rheumatoid arthritis, multiple sclerosis, lupus and Type 1 diabetes. Although there are many different types, they share the same underlying issue in that the immune system is mistakenly attacking healthy tissue which leads to chronic illness.
Staggeringly, 80% of those suffering from an autoimmune disease are female.
It’s a topic I unfortunately know a little bit about, having suffered from Hashimoto’s Thyroiditis for around six years – I wrote about the frustratingly long path to diagnosis here and coming to terms with what is usually a lifelong battle. Right after publishing that I also had a huge number of women get in touch – because like endometriosis, it’s estimated that 10% of Kiwi women have Hashimoto’s, with many of them yet to be diagnosed. So, it seems, there are a lot of us who are battling through our days with illnesses that no one else can see.
So, just why are so many more women than men suffering from these sorts of illnesses? And how come more and more women seem to be getting them? To get some answers, I went to the doctor who always seems to have the answers, Dr Libby.
Absolutely, says Dr Libby, the number of women getting autoimmune illnesses appears to be on the rise. “But it’s definitely multi-factorial,” she says. “I don’t think there’s just one factor contributed to it.”
She points to a few causes – and top of the list appears to be stress. And our diets – particularly a lack of iron, and, I’m sorry to say, constantly reaching for that cup of coffee.
As we discussed earlier this year with women’s health expert Dr Libby, the nutritional content of our food is decreasing – vegetables that were once dense with minerals, vitamins and phytochemicals are now offering our bodies far, far less to run on. Our bodies are still crying out for energy – because we need those biochemical pathways to fuel us, but our food often isn’t measuring up.
“And I think, unfortunately, lots of people think they need caffeine to give them that energy,” says Dr Libby. “But caffeine unfortunately blocks the absorption of a lot of nutrients.”
Yes, so the very thing we’re giving our bodies for energy, is instead robbing us of it. Because of this, she recommends that if you are having a cup of coffee to have – at a minimum – 30 minutes between that coffee and eating, or taking any supplements. One of the nutrients caffeine is very good at blocking the absorption of is iron, which also just happens to be very, very important for energy. And, many of us are already deficient in it.
“It’s the most common nutritional deficiency in the world,” says Dr Libby. “Around 20-30% of New Zealand women in their menstruation years are iron deficient. It’s crucial because iron is needed for the transportation of oxygen throughout the body, which is why when we’re iron deficient, we get very tired because our tissues aren’t getting all of the oxygen it needs.”
Right, that doesn’t sound good. But what does this have to do with autoimmune disease?
“The ripple effect of low iron long term is that then can mess with thyroid function,” she says. “So we need our thyroid to work really well, for good energy because the function of every cell in our body, including our overall metabolic rate, is enormously influenced by thyroid function, but when we’re iron deficient, the body can’t make enough thyroid hormones.”
She says she sees this scenario a lot – a young woman who might be restricting their diet or might just not be getting the right intake of iron, who is then, consequently suffering from low energy levels. And it all happens just as life starts getting stressful. So, what does the body do? It starts making stress hormones, adrenaline. By this stage they might be studying, might have moved out of home, started a new job, experiencing challenges with their friends or new relationships – and so, those stress hormones are going up.
“So then to ‘cope’ you start eating more takeaway food, drinking more alcohol, drinking more drinks that are high in sugar,” explains Libby. “But all of that then starts to lead to the accumulation of fat in your liver, then that messes with your oestrogen metabolism. You can start to recycle oestrogen. That leads to heavier blood loss with periods, so then you’re losing more iron each month, and the iron deficiency becomes even worse.”
All the while, you’re building up that stress response. “See, the first stage of stress response is when adrenaline goes up,” says Dr Libby. “And if you think historically, the way humans used to live, we only ever made adrenaline in response to when our life was literally in danger. So, you know, someone from another tribe might jump out of the jungle at us with their spear, and in that moment we’re ready to fight the fight or get out of there and we get the adrenaline to do that. But as soon as you’ve won that fight, or run away, your adrenaline level goes back to nothing.”
But the same is not true for us today. It’s relentless “Usually, within a couple of minutes of opening our eyes, we’re thinking of everything we’re going to get done that day, and our adrenaline goes up a little bit,” says Dr Libby. “And then you get to the office, and you’ve got 400 unopened emails that have come in over the weekend and so your adrenaline goes up again a little bit. And then you think this is all just too much, so you go get a coffee and your adrenaline goes up again. Then you get a phone call from a colleague saying you missed a deadline and that translates in your head as, ‘I feel criticized’ or ‘I feel like I’ve let my colleague down’ or ‘my colleague thinks I’m lazy or not a good worker’ or whatever it is. So more adrenaline gets made.”
“The modern way of making adrenaline is the constant, relentless, daily production. And so when we do that day after day all of that adrenaline creates inflammation in the body, which is when we enter the second stage of the stress response – elevated cortisol.”
“Elevated cortisol starts to mess with the body’s ability to regulate your blood glucose, which starts to mess with your immune response. So this is where you’re not in an auto immune response yet, but you priming yourself for that.”
The next part, gets really scary. This is when our cortisol levels actually begin to drop – but not because we’re no longer stressed, but because cortisol actually needs a few things to be constructed in our bodies – it needs B vitamins and vitamin C, but if you’re not giving your body enough of those nutrients, you literally can’t construct cortisol.
“And then once you’re in this low cortisol place, the fatigue becomes a lot deeper,” says Dr Libby. “It’s not just, ‘I’m a bit tired today, because I worked hard yesterday’, it feels like a deep unrelenting fatigue. And your body tends to feel stiff when you wake up in the morning – like you’ve aged 10 years overnight – because you’ve lost the anti-inflammatory protection of the cortisol because it’s low now. And then that’s when this is one of the big scenarios that then allows autoimmune diseases to rear their head, because you’ve now lost the effect of cortisol helping to modulate your immune response.”
This, says Dr Libby, is the path many women take to developing serious auto-immune diseases. It’s a slow slip into poor health and chronic conditions, which can be incredibly difficult to fully recover from.
So what can we do? How can we stop that slide, and ensure we don’t develop these life-long diseases?
Cutting back on the caffeine, and putting serious distance between drinking it and eating meals is a good start. But ultimately we need to work on our stress levels.
“One of the things that lowers stress hormones faster than anything, is when we slow our breathing right down,” says Dr Libby. “It sounds too simple to make a difference, but when we breathe in and out through our nostrils, when we inhale into our belly and slowly exhale through our nostrils, our belly shrinking back towards our spine – when we breathe like that, we move our diaphragm. And that communicates to our body that we’re safe. Because we would never be able to breathe like that if our life was truly in danger!”
She recommends starting a ritual in your day where every hour, on the hour you do 20, long slow breaths. Over time, it’s likely that you’ll naturally begin to continually breath into the belly, rather than taking short, sharp shallow breaths.
The second thing she recommends we do is look at the source of stress in our lives and how we perceive disapproval – something that can deeply affect women. We’ll leave Dr Libby’s wise words here for today, but look out for our next piece with her where she explains more about getting to the bottom of the root causes of stress.
We’ll also be continuing to look at Invisible Illnesses and share the stories of women who are suffering from them. If you’d like to share your story, please do! Please email me at [email protected]
For more from Dr Libby, visit her website here